Good and Bad News

IgA 12
IgG 319 (Normal 345-1213)
IgM 56

Dani's number were not the best. She will get a transfusion on Thursday. We went into her IEP meeting today. She is going to get 4 days (3 hours each day) of developmental help. I am sooo excited about it. They also will provide transportation from daycare to the school. Betsy (her main teacher) seems really nice and good with kids. The whole staff (Linda, Nancy, Joanne, and Roxanne) was wonderful and seems really interested in keeping Missy Miss up to par. I am VERY excited to get everything started although I will really miss Stacy, Kathy, and Stephanie at First Steps. I fully expect us to keep in touch.

Just to note for those Mom's that are reading this with MPS kids or for future references. If you saw Dani you would not know she has anything at all wrong with her. She definitely has some issues but for a person to look at her you would not know it. We want to stay on top of everything to make sure she is the best she can be. Our goal is to make her life as normal as possible (as is many parents goal) and we will stop at nothing to get there.

For those non MPS families her diagnosis says she will slow down in all regards after the age of three. We are going to fight this as much as we can and hope that she is the best person she can be. And hope that the medical advances that have occurred the last ten to twenty years will help with that.

I just want to say to Erica who is a WONDERFUL role model and an adult Hurler's friend that does so much for everyone and such an inspiration. You ARE wonderful and I can not thank you enough for your support and help with research, support, and leadership.

I broke down briefly (no need for a tissue :) ) today talking about the future and where/what we are aiming for. Jason and I don't know and don't talk about it, although ironically today he mentioned something about that very subject in a conversation (first time ever). It is just always there in the back of your mind. We are very positive with her and generally it is one day at a time but there are certain instances that you have to think about the future and this was one of them.

Happy 3rd Birthday Missy Miss!!!

9.9 WBC
13.8 HG

240 Platelets

4158 ANC

I thought for old times sake I would put her counts up. We are still waiting to here back on her IGG results so we still do not know if she will need another IVIG infusion or not.

We all survived Chuck E Cheese on Sunday. Dani was not sure whether she liked Chuck E or not. She gave him a high five and followed him during the Birthday parade but that was about it. Otherwise she had a blast as did everyone I believe. She loves the slide they have there and of course the rides. She received quite a few Barbies and princesses.

We did do Dani's assessment through the school district for services and she qualified. She is going to be receiving Speech, Physical, and Developmental Therapy. We are going to set up her IEP on Friday.

We hope you all have a very wonderful holiday season!!!

Cardiology

Dani's appointment went well. Her ejection fraction is between 60-63 (better then last time) and they only increased one med this time. They tried to do a 3D echo but she was done after the regular so we did not get that done nor the EKG.

Her mitral valves are a bit worse but he does not seem to mind. She is back to needing a antibiotic before a dentist appointment.

Baby steps is what we do as many of you know. She is sooooo enjoyable and has such a good time with her brothers. I am hoping Santa brings me a new digital camera for Christmas (Hint Hint Jason ... :) ) Mine has been gone since June. I want some new videos of their cute interactions.

Happy 2 Year Anniversary

Today is Dani's 2 year post transplant. We can not believe it is two years past. I wanted to post these pics. They are Dani and her Cousin Kendyl on Halloween. Then a few are at my sister's housewarming and the kids LOVED the horseback riding (Thanks Jerry). The group one is some of the girls at our family reunion.

She has some appointments coming up. This Tuesday she goes to the cardiologist to see how her heart function is. Then the next week she gets tested by the Ferguson/Florissant school district to see if she qualifies for services and gets another round of immunizations. I will update you as I get results.

Happy Halloween

Everything is fine here. Her infusion last week went very well. They said next month we will just check her blood work and go from there so hopefully we will not need anymore. She also goes to the Cardiologist next month. I can not believe we are coming up on 2 years post transplant. Time has flown. I am not sure what all she will need to get done as far as testing goes. I know they want her to have a hearing test and eye test soon. I might call and get that scheduled at the same time.

Dani is loving daycare now. It seems like all the kids get along pretty well. She really loves Ms. Macy (her teacher). They are having a pajama party for Halloween. I am sure she will have a blast especially since they are ordering Pizza (her favorite).

She did get assessed last week for special services through the school district. They seemed to doubt she would qualify for much of anything. It is a bit frustrating because I want to keep her on track for school and they are only looking at current abilities. Anyway that was just an initial visit. She will be evaluated fully in November.

The Kids Pics

We got their pictures done on Saturday and they turned out really well. General update on Dani is she is holding her own. You can still tell she is not up to par with feeling good but really only when she is tired and bed time. I don't remember if I posted this last time but her next infusion is Oct 20th. She is also getting evaluated tomorrow for special services through the school district. Hopefully they take into consideration that with Hurler's you do not see a regression until after age three and her services through first steps stop at three. We will see how this goes.

Here they are ...

2nd Infusion

Hi All

Missy Miss had her second IVIG infusion. Today was a bit more stressful then last time but it could of been worse. All her numbers were good.

The clinic rearranged nurses today so we did not have Kari. I am paticular enough to enjoy having the same nurse each time. We had Cheryl then Kari and now Angie. I might have to say something next time if it is another different nurse. It is one thing if you are an adult and dealing with this but with a toddler/baby (which she is to us) familiarity is the key. I give HUGE thanks to Kari because she came over at least four times so Dani had a friend there. I have no issues with Angie ... she was good but not familiar.

Dani just woke up and is very aggravated. It gets harder the older she is. I am hoping it does not make her resentful toward us for putting her through this. We have not had that issue up to this point.

First Infusion Complete

I was waiting to get pics to post but I have not made it to Walgreens yet. Dani had her first of at least three infusions two Fridays ago. She did well and it took about 2 1/2 hours. We always know how the day is going to go on how quickly we can get the IV going. Fortunately they got it on the first try this time. She still had an off day last Friday (droppy at daycare) but when she got home she took a bath (she LOVES them) and seemed fine the rest of the night. They will recheck numbers after the third infusion to see if we need to keep going. Her next appointment is Sept 8th. I hope everyone enjoys their long weekend!!!

A small step back

Hi All,

Above are some pictures that Dani's donor sent from our visit. She is getting sooo big. We have had a little set back. She started daycare part time in March. She has had mutiple ear infections, multiple pink eye, and Hands, Foot, and Mouth Disease. Also if she gets bit by a bug it seems to get infected easily. So after this last bout of double ear infections, both eyes having pink eye, three bacterial infections from bug bites, and a nail on each hand peeling from the bottom up, Jason said call HemOnc and asked them. So we called and her IgG (part of her immune system) was low in November (187 and the norm is 500-1000). I am not sure still at this point why it was not rechecked this spring but we ran blood work yesterday and her IgG is at 54. So we are going to start a monthly infusion for the next six months.

Keep her in your thoughts and hope this is just a minor stumbling block.

A Wonderful Introduction

It is with great joy and with a revived belief in the greatness of a stranger’s heart, that I get to report that God blessed us with the event we had been longing for. Last evening we were blessed to be able to meet Danica’s bone marrow donor. We were able to share stories about the situation with each other, our collective struggles, and we were able to connect as people and now great friends. I don’t think that Kelli and I can ever fully express our gratitude for the sacrifice made for the benefit of our Dani or that we will ever be able to repay them for it either. But I hope they know how much we love them for this wonderful gift and that we will continue to try as hard as possible to pay it forward for the remainder of our lives with their example as our guide. Thank you J, S, J, and M!!!

Dani's First Beach Vacation!

Well we took our big vacation for 2008 early this summer. We traveled by RV from St. Louis to Navarre Beach, Florida. It was a 14 hour drive one way and that part was long and tiring. However once we arrived, I think it was a great success for all of us. The kids had a wonderful time swimming, catching crabs and fish, playing at the arcade, etc. The weather was beautiful. Dani had such a great time at the beach and at the pool. The boys and I got a little sunburnt much to Kelli's dismay! No whining she exclaims! hehe. Gotta Love her. All in all, again it being Dani's first real road trip and beach experience I think she had a great deal of fun. The boys I know had fun and were very sad to go home. Probably cause they didnt want to do chores, but more probably cause they had a blast! Its these times that I truly cherish with my family. And think about how truly blessed that Kelli and I are to have such great kids and how blessed we are for as well as Dani is doing. Hope everyone has a great summer!

18 Months Post Transplant

WBC - 6.9
Hemoglobins - 13/4
ANC - 4278
Weight - 35 lbs
Height - 37 inches


It's that time. We had two doctor visits. One was the cardiologist. We went in thinking we would start weaning her off her meds but she had other thoughts. Her heart function was down slightly. Her ejection fraction was 51 (Was 55 at last visit) and her shortening fraction was 25 (Was 32 at last visit). So that was a little frustrating. We increased one of her meds and she will go back in November for another echo.

Her clinic visit was wonderful. All her numbers are good and Dr. Hayashi was very happy with everything. She will go back in October for another followup.

I will post pictures of her later of her in her big girl bed. I need to download them. She is doing really well adjusting to it. We just set it up a week ago. She is saying soooo many words it is amazing. She picks things up very quickly. She calls a cookie a tookie. She loves Dora, Blue's Clues, Franklin, and Little Bear. She can sing all the songs in the show plus many more. She is counting up to twenty (although 13 through 19 sounds the same "intteen"). She knows the alphabet song and we are working on her colors.

The pictures up above are from Grandma Dunn's house. She is getting into everything!!! And using whatever is available to stand on to reach stuff.

Hope all is well with everyone. OHHHHH and if anyone is interested the Thanks Mom Bone Marrow Drive is going on from May 5th - 19th. It is free to join the registry (normally $60) during this time. You can go to http://www.marrow.org/ to find out more about it and order a kit.

Easter and MPS Bowl

Missy Miss had an ear infection a couple of weeks back and all is good. She was on antibotics for a week and had to deal with diaper rash but all is fine now.

The pictures above are from Easter and the MPS Bowl that the Klenke's put together. It was wonderful and we had such a good time. Dani was bowling her heart out. Gabe (and Ethan) won a big Ram's football player for the front yard and Missy Miss won a wagon full of fun stuff in the silent auction. I have two other pics I want to post but they are kind of dark so I will see if I can get them lightened up.

I PROMISE we will get family pics done this spring. I keep waiting for the rash around her mouth to go away and then I will schedule it.

Update

Hi All!!!

Sorry for the lack of updates. All is well with Missy Miss. The first pic is her in her Olivia Newton John phase ... oh and she LOVES taking off her diaper also ... lovely!!! She has a rash around her mouth but it is due to us using steriod cream for her other bumps. We stopped using it and it should go away soon.

She received her first set of shots two weeks ago. For those that do not know, when she received her chemo that erased any inoculations she received previously. So she is starting over on her immunizations. She has a runny nose but I think that is from them and she actually got a few of us sick ... oh well.

We are in contact with her donor and sooo excited about it. Hopefully we will meet up this summer and be able to enjoy meeting the person that gave Dani a chance at a normal life.

We cancelled her eye doctor appointment because we had winter weather that day but I did not think they would get much out of her anyway since she is still not wearing her glasses. We will reschedule for later on in the year.

She is still having a helper come every other week to make sure she is on track and we are starting speech therapy. She will get these services until December and then we will decide if she needs to continue. Personally we are very happy with her progress and her development but the three year mark is kind of a stutter stop with Hurler's patients so we shall see how all goes. We would rather her have extra benefits then let anything slide.

Next appointments are very early in May. She will go to clinic for her 18 months post transplant visit and her cardiologist. I will update after Easter (cause you know you want to see her in her easter dress ....) and after those visits.

Final note ... there is a MPS Bowl going on at the beginning of April. All proceeds will go to the MPS Society. If ANYONE wants to attend please let me know. Jason, Gabe, Ethan, and I went last year and had a WONDERFUL time. Dani will attend this year. April 6th is the date and it is $25 to register. With that you get an MPS T-shirt. Please shoot me an email at rdhdtrue@yahoo.com if you want to come. It will help with research and families in need.

We all are ready for spring and summer!!!!!

A Huge Lost in the MPS (Dani's) World

When Dani was first diagnosised there were a few families that stuck out as Jason and I researched this "disease". One of those was the Holland's. They have three children and all have MPS I. They are a wonderful family and Friday night Spencer (the oldest) passed away. I personally feel that if it was not for them and one other family we would not have the enzyme infusion today that gives our kids back the enzyme they are missing.

They have done additional studies to try to improve our kids outcomes and they feel that might of been the cause of Spencer's death. I know that without their efforts in the research we would not have progressed as fair as we have in solutions to a cure.

If it was not for the pioneers we would not get anywhere and I want them to know that I appreciate everything they have done to get us this far in the fight to cure MPS.

Their web page is .... http://www.caringbridge.org/visit/hollandkids Please send a thought and prayer to them ....

Happy New Year!!!

Hi All!!!!

Christmas was wonderful. I hope you all had a wonderful holiday also. We accomplished quite a bit around the house. And I, for one, am very happy the holidays are over.

We did hear from the hospital that the donor is very interested in meeting us but I have not heard anything from the donor yet. We are hoping for a much calmer year this go around and for the kids to enjoy it.

Gabe and Ethan are doing wonderful at school and Dani is above her age level in skills. Her next appointments are not until March but we are going to start looking into Daycare for her. She needs to be around other children and both Grandma's have done far above what is expected from them. I am hoping to hold it off until she has at least her first immunization shots but we will see.

I hope everyone has a wonderful year!!!!